Gold Ribbon Hero – Pedro

Monthly Archives: September 2018

Meet Pedro, a 5-year-old warrior turning 6 this December. Pedro is one of three children in the Curiel family and is suffering from T Cell Acute Lymphoblastic leukemia (ALL). He is receiving delayed intensification treatments in California with his mom and siblings by his side.

“The past seven months have been the most aggressive chemo then he will go to maintenance where every other week he will receive chemo and eventually getting oral chemo which is not as intense,” his mom, Vilma notes. Vilma said that he’s had muscular stiffness from the new chemo which made him unable to walk and he did not want to get out of bed. “I think this is the most scary part of treatment. After 24 hours he started limping and getting back to his usual routine.”

When he’s not receiving treatment, he is found drawing treasure maps around the house. Vilma said that he loves to draw these maps and hide his “treasure” and have his two brothers go find it! He started homeschooling in August, and he can now read a full sentence. He is expected to return to school after flu season.

Pedro is currently in remission and maintenance will continue for the next three years.

FOR IMMEDIATE RELEASE – September 28, 2018 – Washington, D.C. – The American Childhood Cancer Organization (ACCO), the soleU.S. member of Childhood Cancer International (CCI) provided its overwhelming support today for the World Health Organization’s (WHO) announcement of its new global initiative to address the disparity between childhood cancer survival in low-middle versus high-income countries. The announcement came at the United Nations (UN) General Assembly’s side-meeting on childhood cancer which was organized by the Missions of the Republic of Uzbekistan, the Hashemite Kingdom of Jordan, El Salvador, the Republic of Moldova, the Kingdom of Morocco, the Republic of Philippines and the Russian Federation.

Funded through a generous donation from St. Jude Children’s Research Hospital, the WHO Global Initiative for Childhood Cancer partners with national and international *stakeholders including CCI to provide leadership and technical assistance to support governments in building and sustaining high-quality childhood cancer programs.

Each year, more than 300,000 children ages birth to 19 years are diagnosed with cancer around the world. Approximately 8 in 10 of these children live in low and middle-income countries where their survival rate is often near 20%. This is in stark contrast to high-income countries, where cure rates exceed 80% for many common childhood cancers.

How urgent is this global initiative? “Childhood cancer is the number one non-communicable disease (NCD) cause of death in children globally,” said Ruth Hoffman, ACCO’s Chief Executive Officer, and President of Childhood Cancer International. “Childhood cancer has no borders. Why should childhood cancer treatments and cures? Even in the U.S. the majority of children with cancer continue to be treated with old drugs that were developed in the 1950’s, ‘60’s and 70’s. These drugs cost very little yet are too often unavailable to the majority of children with cancer in the world who happen to live in low to middle income countries. With increased access to essential childhood cancer medicines and radiation, children can be cured of their disease regardless of where they live in the world.” Ms. Hoffman will continue to represent the voice of the families of children with cancer as a member of the WHO Global Initiative for Childhood Cancer.

Increase political commitment and capacity of countries to deliver best practices in childhood cancer diagnosis and treatment;

Support governments to develop high-quality cancer centers as well as develop standards and tools to guide the planning and implementation of interventions for early diagnosis, treatment and palliative and survivorship
care inclusive of the needs of childhood cancers;

Support governments to safeguard families of children with cancer from social isolation and financial ruin as a result of cancer care;

Prioritize cancer as a child health priority and increase available funding at the national and global levels.

This initiative is founded on the World Health Assembly’s resolution Cancer Prevention and Control through an Integrated Approach (WHA70.12), which urges governments and WHO to accelerate action to achieve the targets specified in the Global Action Plan and 2030 UN Agenda for Sustainable Development to reduce premature mortality from cancer.

Actions to increase childhood cancer survival today represent effective and tangible steps as part of the broader fight against non-communicable diseases – steps that will catalyze global efforts to transform childhood cancer outcomes worldwide and ultimately save many more lives of children, now and for years to come.

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The U.S. largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness and providing educational resources and innovative programs to children with cancer, survivors and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States. www.acco.org.

Childhood Cancer International (CCI) was founded in 1994 and is recognized as the largest patient support organization for childhood cancer in the world. Comprised of 188 member organizations in 98 countries, CCI represents the voice of children and adolescents with cancer, childhood cancer survivors and their families globally. Operating as a non-State Actor in official relations with the World Health Organization (WHO), CCI engages with the WHO as well as international develo
pment organizations, policy-makers, civil society organizations, research and medical professionals to advocate for the rights of children and adolescents with cancer and prioritize childhood cancer as an integral part of the local, national and global child health and development agenda.www.childhoodcancerinternational.org

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization and President, Childhood Cancer International. rhoffman@acco.org; 202-262-9949.

Currently being treated for Stage 4 Neuroblastoma

Meet Beckham, one of our ambassadors for the month of September. He is a goofy 8 year old currently being treated for Stage 4 Neuroblastoma at Memorial Sloan Kettering in New York City. Beckham was diagnosed on September 11, 2013 at the age of 3. A few weeks prior to his diagnosis, Beckham was playing with his sister and they banged their heads together. This resulted in Beckham’s black eyes. His mom remembers looking at pictures from that time and seeing his eyes starting to darken.

“I called the doctor and they said to watch it and call if things worsened. They went down and then started to darken. I ended up taking him in to his pediatrician and they drew labs. Later that day I got a call that Beckham’s labs were abnormal and that we had an appointment with oncology up at Primary Children’s Hospital in Salt Lake City,” his mom recalls.

At first, doctors didn’t think Beckham had cancer, they went through many diagnoses, everything from mono to anemia. The doctors were not convinced and decided to do a bone marrow biopsy which revealed that Beckham had tumors throughout his body and bone marrow.

Treatment was aggressive and as a result Beckham started chemotherapy. The doctors performed a resection of the main tumor and radiation to his skull in Utah which resulted in soft tissue tumors and bone marrow clearing well but the tumors in his bones had hardly changed. Beckham’s mom recalls going onto a Facebook group for Neuroblastoma and was urged to take him for a second opinion at Memorial Sloan Kettering. February 2014 was the first trip to NYC where Beckham received MIBG therapy, NK cell therapy, radiation, 3f8 antibioties, cryotherapy surgery, numerous rounds of chemotherapy and surgery to remove lymph nodes in his upper right underarm and chest.

Beckham has had two central lines and is on his third port. “He has endured four relapses, the most recent being March of 2018 and his doctors say he is a miracle boy.”

Fortunately, his latest scans show no evidence of disease. He is currently in treatment for an alk mutation which was found in his past two surgeries. Beckham has a lot of personality and loves to make people laugh – we are looking forward to many laughs with Beckham!

Beckham is one strong little boy and an example of true perseverance. Beckham expresses to his mom that he is never giving up and his cancer is going down!

Meet Braeden or “Brae” as his mom lovingly calls him. He’s a three year old, fun-loving “ladies man” who is wise beyond his years. Brae’s mom, Kendra noticed in January of 2018 that he was whining a lot. She took him to get checked out several times and after being told he had pneumonia, the flu and even being tested for having swallowed a toy, doctors decided to do a biopsy on his back. Doctors took a sample of the mass they found in his lungs and the diagnosis was clear. “On May 5, 2018, Brae was diagnosed with AML leukemia with a genetic mutation of monosomy 7. We just found out about the monosomy 7. Basically that means that Brae has 45 chromosomes instead of 46 like everyone else.”

Kendra was faced with a tough decision when it came to Brae’s treatment plan; get a bone marrow transplant and face three rounds of chemo with a 30% chance of relapse, or five rounds of chemo with a 60% chance of relapse. Kendra ultimately decided against the transplant and is happy to report that after Brae’s first round of chemo, his bulky tumor is gone. Doctors have continued to treat Brae with four more chemo rounds.

Fortunately, Braeden is facing treatment like a little soldier; the only side effect he has experienced was hair loss, which he doesn’t seem to mind. Kendra notes that everytime he goes into the hospital, the nurses fight to work with him and that he charms them. She said when Brae is at home, he loves to watch tv with his big brother and play outside. He’s particularly interested in art and loves to paint. When he goes to the hospital you can usually find him in the art room playing with the popsicle sticks and paint.

He mom happily informed us that he is currently ‘doing great’ after his fourth round of chemo. Through it all, Braeden is a positive and happy three year old.

New initiative seeks to address the disparity between state budget allocations for adult cancer research and pediatric cancer

FOR IMMEDIATE RELEASE – September 20, 2018 – Washington, D.C.

The American Childhood Cancer Organization (ACCO) announced today its Why Not Kids state-level advocacy campaign, a new initiative based on successful efforts in Kentucky, that will focus on working with state governments to close the gap between budget allocations that go towards adult and childhood cancer research. ACCO will strategically implement Why Not Kids in pilot sites to advocate for policies and funding in recognition that children are not simply small adults and adult cancer treatments cannot simply be dosed down to effectively cure kids.

How urgent is this call to action? “Childhood cancer is the leading cause of death by disease in children in the United States,” said Ruth Hoffman, ACCO’s Chief Executive Officer. “The majority of children with cancer continue to be treated by drugs that were developed in the 1950s, ‘60s and ’70s. In fact, there’s been just 3 new drugs approved by the FDA in the last 20 years to specifically treat childhood cancer, compared to the more than 185 new drugs approved to treat adult cancer types over the same time period. Working towards increasing childhood cancer research through state-based budget funding can play a significant role in addressing this disparity in access to new cancer treatments.”

This disparity became very personal to ACCO Director of Government Relations and External Affairs, Jamie Ennis Bloyd, when her five-year-old son was diagnosed with aggressive stage 4 lymphoma and leukemia during the Kentucky legislative session in March of 2014. A lobbyist at the time, Jamie quickly realized the gap in state-level engagement and funding for childhood cancer. Working with state legislative commission staff, she discovered in the last 3 biennial state budgets over $15 million dollars had been allocated to adult cancer research, causing her to wonder, “if state funds have been allocated to adult cancer research – why not kids”? She soon learned no other state in the country had specifically invested in childhood cancer research either and Why Not Kids was born.

In the 2018 Kentucky legislative session Governor Matt Bevin and the Kentucky General Assembly recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating first time funding of $5 million dollars for collaborative childhood cancer research efforts at the state’s two children’s oncology group hospitals. Already this new funding has resulted in the revelation of a cluster of a 40-county area in Kentucky in which children have an 87% higher incidence of pediatric brain tumors than what would be expected. Pediatric brain tumors are now the leading cause of death for children diagnosed with cancer in America.

Other projects funded in Kentucky through the Why Not Kids movement include drug development for molecularly targeted therapies in Ewing’s sarcoma; trials for a new methodology for less invasive and earlier detection of relapsed Acute Lymphoblastic Leukemia; investigation into new biomarkers for earlier identification of neurocognitive impact of chemotherapy; and expansion of basic science and clinical research utilizing CAR-T immunotherapy in Acute Myeloid Leukemia, neuroblastoma and pediatric brain tumors (currently only used for B-cell malignancies).

At an event in Kentucky on Wednesday commemorating September as Childhood Cancer Awareness Month and speaking publicly for the first time regarding the research projects selected, Governor Matt Bevin stated, “This encourages, with just a few million dollars, the ability for collaboration in a powerful, powerful way,” Bevin said. “And I think that’s creating a tremendous level of dialogue, but also hope for the families, for the universities themselves, and for the possibility of finding cures for childhood cancer.”

ACCO’s Why Not Kids research efforts will be focused on promoting the latest in scientific advancements utilizing immunotherapy and molecularly-based treatment. ACCO will work with state pediatric oncology programs and implement these awareness and advocacy campaigns utilizing state cancer registry data, population-based incidence, and virtual tissue biorepositories to inform funding decisions. Funding for Why Not Kids pilot sites comes from Amazon and have been selected based on the June 2018 Centers for Disease Control published report of childhood cancer incidence by state with further review by experts with over 50 years of combined experience in state level cancer epidemiology and cancer registries.

About ACCO

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. The nation’s largest grassroots organization at the forefront of the crucial battle against childhood cancer, the ACCO is dedicated to shaping policy, supporting research, raising awareness, and providing educational resources and innovative programs to children with cancer, survivors, and their families. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has 35 local ACCO affiliates known as Founding Hope chapters throughout the United States. For more information on the partnership with Amazon visit www.acco.org/amazon.

FOR MORE INFORMATION OR TO SET UP AN INTERVIEW: Contact Jamie Ennis Bloyd, Director of Government Relations and External Affairs, American Childhood Cancer Organization at jbloyd@acco.org 859-948-4626 or Ruth Hoffman, Chief Executive Officer, American Childhood Cancer Organization rhoffman@acco.org 202-262-9949.

Living as a Survivor of Childhood Leukemia

There are nearly 5,000 new diagnoses of childhood leukemia every year in the United States, making this so-called “rare” disease the most common type of childhood cancer. In fact, childhood leukemia currently accounts for almost one-third of all childhood cancer diagnoses. Thanks to amazing advances in the efficacy of today’s treatment protocols, the majority of children diagnosed with leukemia today can expect to make a full recovery. The 5-year survival rates for the two main forms of leukemia—Acute lymphocytic (lymphoblastic) leukemia (ALL) and Acute myelogenous leukemia (AML)—are greater than 85% and about 60-70% respectively.

However, achieving remission and then joining the ranks of the “survivors” still requires that children undergo months, even years, of intensive chemotherapy. And despite the amazing advances in chemotherapy, it is still involves powerful drugs that can have serious and severe short- and long-term health risks. Indeed, one of the goals of researchers today is not only to ensure that no child dies of this dreaded disease, but also to find safer and less toxic treatment options. So while families are so focused on the short-term goal of survival, it is important to remain focused on both short- and long-term survivorship issues to help mitigate physical and emotional side effects.

Short Term Survivorship Issues

Perhaps the most critical step in monitoring and maintaining your child’s physical health during the first 2-5 years after treatment is ensuring that your child undergoes routine cancer screenings to watch for a relapse or recurrence of the cancer. These screenings are also useful for monitoring short- and long-term side effects of the chemotherapy. Although the schedule of screenings is different for each child, it usually consists of follow-up visits once a month or so for the first year after treatment, then decreasing in frequency after that. It is unusual for leukemia to return once a child has been cancer-free for 2 years or so, but most oncologists prefer to continue routine monitoring for at least five years.

While many parents are expecting concerns about their child’s physical health to predominate the immediate aftermath of treatment, most are surprised at the unexpected emotional and social issues that often arise after treatment. Challenges such as establishing a normal routine, going back to school, and reestablishing friendships and social connections often prove as difficult, or even more difficult, as the physical issues. Specific emotional issues vary depending on the age of the child and the duration of treatment, but luckily, most of these challenges are only temporary, and can be overcome with patience, encouragement, and lots of support from family, teachers, and even counsellors. Many cancer centers offer support services, in fact, to help families make this potentially difficult transition easier.

Long Term Survivorship Issues

In the long term, survivorship issues are usually focused on potential health concerns resulting from the toxicity of the chemotherapy treatments. Understanding the potential for long-term health problems is the first step to identifying and addressing these concerns as quickly as possible. The most common long-term health concerns among adult survivors of childhood leukemia include:

Secondary cancers: Chemotherapy has been linked to the development of other cancers in adulthood; for instance, treatment for ALL carries a small risk of developing AML as an adult.

Heart, lung, and bone problems: Some chemotherapy drugs can cause long-term damage to the heart and/or lungs, usually a higher risk for patients with ALL than AML. Steroid-based treatments have been linked to the development of osteoporosis.

Developmental delays/learning problems: Radiation therapy and some chemotherapy drugs have been linked to development delays in young children; therefore, most oncologists will try to avoid the use of radiation in young children whenever possible.

Growth delays: Some types of cancer treatments, especially if they involve stem cell transplants, can impact a child’s natural growth. In severe cases, it may be possible to address this concern with growth hormone therapy.

Fertility concerns: Some chemotherapy drugs have been linked to problems related to sexual development and reproduction.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Long-Term Prognosis and Survival Rates for Childhood Leukemia

Before beginning any discussion of prognosis and long-term survival for anyone with childhood cancer, including leukemia, it is important to understand that oncologists rarely use the term “cure”. Instead, oncologists focus on short-term outlook in terms of remission, minimal residual disease, and relapse. For discussion of longer-term outlook, oncologists look at the 5-year survival rate, or how many children remain cancer-free 5 years after the end of treatment. In general, children who are still cancer-free after five years are considered “cured” of the disease.

Remission: A child is said to have achieved remission if, after the first phase of chemotherapy (induction), the bone marrow contains less than 5% of leukemia cells, blood cell counts are normal, and no symptoms are present

Minimal residual disease(MRD): The cancer did not respond as expected to the initial round of chemotherapy, and cancer cells remain in the bone marrow when measured with the most sensitive testing tools (beyond a simple microscope scan)

Relapse: Growth of new cancer cells after treatment is complete. MRD usually involves a higher risk of relapse. Both MRD and relapse usually require a more intensive chemotherapy regime.

Once treatment is complete and deemed successful (remission), oncologists can begin to discuss the 5-year survival rate. Thanks to advances in treatment methodologies, the 5-year survival rate for childhood leukemia has greatly improved over the past several decades. The 5-year survival rate for Acute lymphocytic leukemia (ALL) is now greater than 85%. The 5-year survival rate for Acute myelogenous leukemia (AML) remains lower than for ALL, at 60-70%, but has still improved. Moreover, the rates for AML vary greatly spending on subtype and other factors.

These numbers do not, however, provide a specific prognosis for any given child. They are only averages compiled from treated cases of childhood leukemia from across the country. Your child’s prognosis and long-term outlook after treatment will be heavily dependent on your child’s diagnosis, response to treatment, and general health.

Prognosis Factors for Childhood Leukemia

Prognosis factors are a series of measurements that your child’s oncology team may use to potentially the degree of risk posed by the cancer, as well as to optimize a treatment plan with the greatest possible chance of success. There are several key prognosis factors that oncologists use when dealing with a leukemia diagnosis. In general, these prognosis factors are the same for ALL and AML, but they do not seem to play as great a role in either guiding treatment or predicting outcomes for AML.

Risk group: standard-risk, high-risk, or very high risk. These groupings help determine the intensity of treatment and may impact long-term prognosis; however, it is important to note that even children in the very high-risk group still have an excellent chance of achieving remission.

Age at diagnosis: Children between the ages of 1 and 9 seem to have a more positive prognosis than children under the age of 1 or over the age of 10. (This factor applies only to B-cell ALL; age does not appear to be a prognosis factor in T-cell ALL.)

Initial white blood cell count: Very high WBC counts at diagnosis is generally considered high-risk or very high-risk.

Subtype of ALL: Children diagnosed with pre-B, common, or early pre-B-cell ALL seem to have a more positive prognosis than children with mature B-cell leukemia; this is also true of B-cell ALL if treated with intensive chemotherapy.

Gender: In general, girls seem to have a slighter better prognosis than boys; this gap has shrunk in recent years thanks to today’s advanced treatment options.

Race/ethnicity: African-American and Hispanic children may have a slighter worse prognosis than other ethnicities.

Spread to other organs: If the leukemia has spread into the fluid around the brain and spinal cord, and the testicles in boys, it is usually classified as high-risk or very high-risk.

Number of chromosomes and chromosome translocations: Some studies have begun to link longer-term prognosis with the number of chromosomes within the leukemia cells, as well as with translocations between specific chromosomes.

Response to treatment: The initial reduction of leukemia cells in the bone marrow during the first 1 to 2 weeks of chemotherapy may help determine long-term prognosis; however, if the leukemia does not respond as expected in this time frame, most oncologists will move to a more intensive treatment protocol.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on the ACCO, or to order resources for you or your child, please visit our website at www.acco.org , call 855.858.2226 or visit:

Amazon + ACCO 2018

Amazon provides funding for policy initiative to overcome the disparity between adult and childhood cancer research

Dear ACCO supporters –

As you know, September is Childhood Cancer Awareness Month (CCAM). Our team has been hard at work the past year preparing for this important month. Today we are reaching out to our supporters so that you are the first to hear some very exciting 2018 CCAM updates. We hope you followed along last year during Childhood Cancer Awareness Month as Amazon + ACCO joined together in a revolutionary awareness campaign to transform the future of how corporate American recognizes childhood cancer as a national child health priority. This year is even bigger and better, literally! Today we are thrilled to announce Amazon + ACCO 2018 as we unveil our biggest awareness icon yet – a massive Amazon Prime airplane emblazoned with a old ribbon and featuring the American Childhood Cancer Organization’s registered taglines “GO GOLD®” and “because kids can’t fight cancer alone”.The plane will take to the skies and deliver packages to customers across the nation, bringing a little bit of gold (and hope) everywhere it goes (www.acco.org/amazongoesgold)!
We are also excited to announce that throughout the month Amazon will also host “Camp Amazon” Gold Edition activities in Amazon robotics fulfillment centers across the United States to engage children diagnosed with cancer who demonstrate an interest in Science, Technology, Engineering, and Math (STEM). The fulfillment center will turn “gold” for the occasion and invite cancer children from local hospitals to see how Amazon robots help deliver smiles to customers around the world. On behalf of the children participating in Camp Amazon Gold Edition, Amazon will also make donations to the pediatric oncology programs committed to saving their lives.

Until September 2017, no one knew hope could be found in a box. In the weeks and months to follow, we heard from thousands of you impacted by childhood cancer and who were so deeply moved that the world’s largest online retailer would join in the fight against the disease. In September 2018, we are excited to share that millions of Amazon customers will once again receive the special edition box featuring the gold ribbon, the international symbol of childhood cancer. We can’t wait to see your photos after you receive a box, please be sure to share with us on social media!

Additionally, like last year, in September thousands of Amazon fulfillment center employees will dress in their pajamas at work as a part of ACCO signature program PJammin®, recognizing pajamas are the battle uniform for children with cancer who often are forced to spend months and even years at a time fighting for their lives in their PJ’s. Soon we will be reaching back out to you to join our ACCO team and Amazonians as we go PJammin in hopes that the movement will go viral so that children fighting for their lives in their pajamas all across the country – many times isolated by hospital walls and connected only to the outside world by social media – will not feel alone.

Last but not least – ACCO is so proud to share with you first that in 2018 Amazon has chosen to take the next key step towards improved outcomes for children battling cancer by providing financial support of a new policy initiative, Why Not Kids. Using Kentucky as a successful model, Amazon + ACCO will strategically implement Why Not Kids in pilot states across the country to advocate for policies and state-level funding in recognition that children are not simply small adults.

Although it is important to acknowledge significant recent accomplishments including the 21stCentury Cures Act, RACE (Research to Accelerate Cures and Equity) for Children Act, and Childhood Cancer STAR (Survivorship, Treatment, Access, and Research) Act, we know a large disparity still exists between the amount of funding the federal government allocates for adult and childhood cancer research. The reality remains that in the past two decades only 3 new drugs have been approved by the FDA specifically to treat childhood cancer. This compares to more than 185 new drugs approved to treat adult cancers. We think kids deserve more. Involvement of corporate partners is more important than ever to give all children access to more effective treatments with less toxicity.

This disparity became very personal to ACCO Director of Government Relations and External Affairs, Jamie Ennis Bloyd, when her five-year-old son was diagnosed with aggressive stage 4 lymphoma and leukemia during the legislative session in March of 2014. A state public health lobbyist at the time, Jamie quickly recognized the gap in state-level engagement and funding for childhood cancer. Working with state legislative commission staff, she discovered in the last 3 biennial state budgets over $15 million dollars [1] had been allocated to adult cancer research. Never in the history of the Commonwealth of Kentucky had the legislature invested in broad-based support of pediatric cancer – causing her to wonder aloud, “If state funds have been allocated to adult cancer research – why not kids”? She soon learned that very few, if any, states in the country had specifically invested in childhood cancer research either.

In the 2018 Kentucky legislative session Governor Matt Bevin and the Kentucky General Assembly recognized this urgent need and set a national precedent for state engagement in the fight against childhood cancer by appropriating first time funding of $5 million dollars for collaborative childhood cancer research efforts at the state’s two children’s oncology group hospitals. Already this new funding has resulted in the revelation of a cluster of a 40-county area in Kentucky in which children have an 87% higher incidence of pediatric brain tumors than what would be expected. Pediatric brain tumors are now the leading cause of death for children diagnosed with cancer in America. We want to bring this type of awareness and state level funding for childhood cancer research to all fifty states and we are so thankful for Amazon’s financial support to ACCO to make this happen.

We hope you join with us in sharing a sense of excitement and pride for being a part of our organization and a community of supporters who make this work possible. We couldn’t do it without you. Please stay tuned throughout the month as we post daily about other corporate partnerships, the amazing work of our 33 Founding Hope chapters, our Gold Ribbon Heroes, Go Gold events, Light Up Gold, PJammin® in schools, updates on the state proclamation initiative, and so much more.

Please consider asking friends and family to join follow us on social media and sign up for our mailing list (hyperlink here to webpage to join mailing list) to join us on our quest….because kids can’t fight cancer alone!®

Ruth Hoffman,

Chief Executive Officer

American Childhood Cancer Organization

The American Childhood Cancer Organization was founded in Washington, D.C. in 1970 by parents of children and adolescents diagnosed with cancer to advocate for their needs and support research so every child survives and leads a long and healthy life. Since its inception, the ACCO has helped support more than half a million families affected by childhood cancer. ACCO now has more than 33 local ACCO Founding Hope affiliates throughout the United States. For more information on the partnership with Amazon visit www.acco.org/amazon.To make a donation, please visit www.acco.org/donate.

The American Childhood Cancer Organization is a 501(c)(3) public charity, whose programs and services are funded entirely by private donations, foundation grants, and corporate contributions.
IRS Tax ID 52-1071826 All donations are tax-deductible as allowed by law.
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